This is the speech I gave ar the spinal cord collaboration.
Today, I stand before you to shed light on a topic that often goes unnoticed—the struggles faced by spinal cord individuals. It is a journey marked by immense challenges, both physical and emotional, but one that carries a message of hope, resilience, and the power of the human spirit.
But first I would like to tell you a little about myself. My name is Robert Vanemon and I was born and raised here in Williamsport. I have two beautiful daughters. And before my accident I was a sound engineer, ran sound for bands. I would also DJ and do open mics. Plus computer programmer and web design. On July 4th of 2016 my new journey began. I am a C5, C6, T10 quadriplegic.
On July 4th I got into a car with someone that had been drinking. I broke my C5, C6 and severed my T10. Besides my spinal injuries I also broke all my ribs but one on the right side. This was just a few of the many injuries.
I was rushed right into surgery to stop the bleeding on my spinal cord. Then waited 36 hours before touching me as they only gave me a 5% chance of making it. They then took me back in for a 10 hour back surgery and added hardware. Next was my neck surgery where they inserted long rods. Ened up having a blood clot in right leg so they put in a stent. I would punctured my left lung every time when they would turn me over. So I went in for another surgery to plate my ribs. I ened up with chest tubes on both sides.
I was intabated for 9 days as I could not breath on my own and because of this and bringing up so much blood they said my only option was to give me a tracheostomy. They tried putting a feeding tube in but was having issues as my esophagus shut itself off. Because I had already gone about 10 days without eating. So they put a feeding tube directly in my stomach through my abdomen. Slowly they started taking me off the vent to see if I could breath on my own. After a few days they had taken me off and I was breathing on my own with a little help I believe.
After sometime in the ICU I went to Magee Spinal Institute in Philadelphia. I did a short stay there until I took a pill with some apple sauce and the next thing I recall is waking up on a vent in the ICU.
So after a few days I was taken off the vent. A few days later I spiked a fever and this turned into 8 week and I was only getting sicker. We started the fight of having to be moved to another hospital. After being moved to another hospital they found that mursa was eating the lining of my lungs.
After healing up from that I wanted to go to a rehab in my hometown. I wont regret the decision, they were wonderful. I wont say lucky but there happen to be one other paralyzed man at rehab with me that I still stay in touch with.
After getting out of rehab I started shutting down. I kept from others how I was feeling physically and mentally. I kept ending up in and out of the hospital. I had a feeding tube in still. I was depressed and giving up seemed like the easiest way out. It was not just the spinal cord injury, normal life was happening and in my case it wasn’t for the best. I ended up in some not great places and not receiving so great care.
I ended up to the point of laying in bed for 2 years. The only time seeing the sky is on a stretcher headed to the ER. Laying in bed for so long did its damage and I started getting very bad infections and ended up in and out of the hospital.
I’ve had some pretty major issues with my throat and esophagus. A stricture where the trach was place and a stricture in the 3rd quadrant of my esophagus. I been getting stretched every 2 months by getting an endoscopy at geisinger. Currently I have my 3rd stent placed and it will be removed in 3 more months. So far, I have had over 40 endoscopy and more ahead.
In 2021, I met the love of my life. And I met her while laying in bed of all places. Then the next chapter of my life begins. It started with sitting up for the first time in years and passing out while in the hospital.
I have changed my life drastically. I set goals for myself daily and they don’t have to be a physical ones either. I’m trying to reconnect with friends and make new ones as well. I started connecting with others in the spinal community, all over the world. I started a YouTube channel showing others how we live life. We try to pay it forward by helping others get things they are having trouble getting or finding. I want to start a live podcast with others with spinal cord injuries, we spent the last few month setting up my studio. I honestly would be here all day telling you just how much life has changed. There is just so much I’m greatfull for today.
But being a quadriplegic means losing the ability to move or control one’s limbs due to a spinal cord injury. Imagine waking up one day, unable to perform the simplest of tasks we take for granted—brushing our teeth, tying shoelaces, or even giving a loved one a warm hug. Quadriplegia is not just a physical disability; it also affects one’s mental and emotional well-being.
Firstly, the physical obstacles faced by quadriplegics are unrelenting. Simple tasks that once required little thought or effort now become monumental achievements. The reliance on assistive devices, such as wheelchairs or specialized tools, becomes a constant reminder of this new reality. Each day, quadriplegic individuals must navigate inaccessible environments, overcome physical limitations, and adapt to a world that often fails to accommodate their needs.
Yet, the struggles go beyond the physical. The emotional toll is profound. Quadriplegia brings forth a spectrum of emotions—frustration, anger, grief, and even moments of self-doubt. The loss of independence, living with chronic pain, and the challenges of rehabilitation can take a heavy toll on mental well-being. However, amidst these trials, quadriplegics demonstrate remarkable courage, resilience, and an unwavering determination to rewrite their own narratives.
One of the most significant challenges faced by quadriplegics is the response of society. Stereotypes, misconceptions, and the invisible barriers of prejudice can make it even more challenging to navigate through an already challenging existence. It is our responsibility as a society to dismantle these barriers, foster inclusivity, and ensure equal opportunities for all individuals, regardless of their abilities.
But amidst these struggles, there is an inspiring message of hope. Quadriplegic individuals prove time and time again that they are far more than their disabilities. They are artists, athletes, advocates, and contributors to society. Their achievements, triumphs, and stories of resilience serve as a testament to the extraordinary strength of the human spirit.
As we reflect on the struggles faced by quadriplegic individuals, let us commit to creating a society that celebrates diversity, inclusivity, and the inherent worth of every individual. Let us break down physical and attitudinal barriers, fostering a culture of empathy, understanding, and support.
In conclusion, the challenges faced by quadriplegics are undeniably immense. We must recognize and acknowledge the physical, emotional, and societal hardships they endure. Still, within these struggles lies a powerful testament to the human capacity for resilience, hope, and the ability to transcend adversity. Let us rally together to build a world that is inclusive, accessible, and embraces the boundless potential within every individual, regardless of the challenges they face.
Lastly I want to talk about something very important to me and that is having an advocate.
Certainly! Having an advocate as a spinal cord patient is of utmost importance and can positively impact your overall well-being and quality of life.
Navigating life with a spinal cord injury can be challenging and overwhelming. From medical appointments to rehabilitation sessions, you may encounter various obstacles along the way. This is where having an advocate can truly make a difference. An advocate is someone who supports and actively stands up for your needs and rights.
One primary benefit of having an advocate is that they can be your voice when you are unable to speak up for yourself. For instance, during medical appointments, an advocate can help ensure that your concerns and questions are addressed, and that the medical professionals understand your unique needs. They can ensure that you receive appropriate tests, therapies, and treatments, and can also help you understand the information provided by healthcare providers.
An advocate can also guide you through the complex maze of insurance and legal issues. They can help you understand your rights, assist in filing claims, and ensure you receive the support and resources you are entitled to. Whether it be navigating the intricacies of insurance coverage or seeking compensation for medical expenses, having an advocate by your side can alleviate stress and improve your chances of a favorable outcome.
Furthermore, an advocate can provide emotional support. Living with a spinal cord injury can be emotionally challenging, and having someone who empathizes with your experiences can be immensely valuable. They can lend a listening ear, offer advice, and provide encouragement during difficult times.
In addition, an advocate can help you access community resources and connect with support groups or organizations that specialize in spinal cord injuries. These networks can offer invaluable support, information, and opportunities to connect with others who share similar experiences.
Finally, having an advocate can promote your overall sense of empowerment and self-advocacy. They can help you develop the skills and knowledge needed to assert your rights and make informed decisions about your healthcare and lifestyle choices.
In summary, having an advocate as a spinal cord patient is vital for several reasons. They can be your voice, guide you through complex systems, provide emotional support, connect you with resources, and promote your self-advocacy. Together, you and your advocate can work towards ensuring your needs are met, improving your quality of life, and overcoming challenges more effectively but truly only if, you stay out of your head some and start to speak up more.
Thank you for allowing me to speak.
